"God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people, then He helps the parents to grow stronger through the journey. Raising a child with special needs doesn't TAKE a special family, it MAKES a special family."
Author unknown

Wednesday, December 19, 2007

Here is a little video that we put together to thank all who have showed us concern and offered to help with Whitnee. We all thank you and hope that you have a Very Merry Christmas and a Happy New Year.

Monday, November 5, 2007

Just a quick update. All is well here, Whitnee had her testing done at Primary Childrens on Friday and to our surprise she did really well. Her Physical Therapy test went a lot better then expected. She actually rolled from her back to her left side for the first time in her life with little help!!! And yes they did get it on film!

Her testing with Dr. Swoboda went really well also, showing her strength had doubled since May! Proof that good nutrition is very important! They also started her on a new Medicine that we are hoping will help her gain more strength.

And to top off the great news at our house Whitnee was approved for the RSV shot today! (Insurances usually do not approve children 2 and older for this shot.) We are being blessed and defiantly being watched over! She was also approved for her Power Chair and her stander and we should see them by the end of the month.

But the battle continues for her car seat and bath chair! Dang Insurance.

Whitnee had a really fun Birthday. We sang Happy Birthday to her, which made her cry! ( I think it was a little loud and scared her). We then blew out the candle on the cake and had cake and ice cream which was great. Whitnee could not get enough of the ice cream and she was very determined to feed herself. It was cute. She loved her presents and her new ball toy. She stayed up really late playing with it, I think she loved watching Nic and Kortnee chase the balls more then anything.

Thursday, October 18, 2007

Well, we have had yet another stay at Primary Children's Hospital in the PICU. This was due to a cold that hit her hard and fast. I got concerned with her Oxygen numbers and her heart rate along with her breathing so we called the paramedics who took us up to Primary Children's. Her lower left lung collapsed the night we got there, I think they decided to call it a Bronchial Virus. The good new in all of this was that the did not have to intubate and we were only there 7 days. We have been home a week now and she is doing great.

I have spent my free time making signs and posting them around the house to remind all of us to keep our hands clean. We sure hope that this was not a precursor to the season for us.

On to better news, today is Whitnee's 2nd birthday!!!!! This is a HUGE milestone for her with this disorder even though she is type II. She will get to open her presents tonight along with eat as much ice cream as she can (sorry no cake). We can hardly wait!!!! Thank you to my wonderful neighbor for making her Birthday cake. We can hardly wait to see it!

I took Whitnee shopping for her birthday today, she got some new clothes and a had fun strolling around the store. It was just nice to be out of the house and hospital for that matter.

Monday, September 17, 2007

Well, last week marked a big day for us, Shriners Hospital donated a manual wheelchair to Whitnee. And it is even Purple! It was a really exciting day for us, even though you see that Whitnee was really tired for the fitting.

It has taken some getting used to, due to Whitnee's partially dislocated hip it dose tend to put pressure on her hip if she has been in it to long, but I have noticed in the last couple of day's that she is doing better sitting in it. I tried to take her out the other day and she took the lap buckle and tried to buckle it back up herself. So we are seeing that she enjoys being in it. And I know it is a lot more comfortable for her to sit in.

I think it has taken me some time to adjust to the chair too. It was bigger then I had expected weighing in at 40lbs, which is not a whole lot but it is very difficult to to lift and load.Putting it in the Van for the first time was very interesting. I Thought I would not be able to get it in. I was very thankful that we had just purchased the Van and that I was not putting it in the explorer. We now have ramps that help me load and unload but running to the store is not and in and out experience any more. I have to allow plenty of time to load and unload. Kortnee and Nic are a lot of help with it too.

Our next project is building a ramp in the garage for the wheelchair. Right now it is interesting getting it up the steps and into the house. I am glad there are only 3 steps.

We had a chance to go and see Uncle Chris at at Camp Williams for Governors Day a couple of weekends ago and see some really cool Helicopters and Air plains fly over head. Here is Nic Whitnee and Kortnee sitting in a Helicopter after the ceremony. It was really cool.

As for other news this month. Mom got a Van for her birthday as mentioned before and Since she had so much free time on her hands, ha ha ha. We adopted a Shorkie Puppy this past week. She is 1 years old and really cute. Both Dad and Mom felt that a therapy dog for Whitnee might do her some good this winter being cooped up and all. So we are all adjusting to the new little dog running around. Kortnee and Nic are playing Soccer again and seem to be enjoying it. And Nate just went on a 50 mile 4-wheeling trip. He was in heaven.

Everyone is doing well and keeping very busy. Fall and Winter is a scary time of year for us with Whitnee, with her chance of catching any thing being very high. So we want to thank you for all of your thought and prayers. We are also great full for those of you who have taken the time out of your busy schedules to call us and visit with us. We sure do have some great support out there.

Tuesday, August 14, 2007

Well, I promised a picture of Whitnee learning how to drive a power chair. We went up yesterday to Shriner's to try out another joy stick, this one is very sensitive to the touch so it was perfect for her to use. She sat in the chair for 45 minutes just spinning in circles. She loved every minute as you can tell.

We go back up to Shriner's on Thursday the 16th to sit down with Shriner's and IHC Health to write up our order for her power chair. And if every thing goes well with our Insurance ( cross our fingers) and they don't turn us down for anything we should have her power chair around Thanksgiving. Yippee!!!! We can hardly wait for her to be able to move around on her own.

Yesterday when we got there and they were setting up her joystick and trying to get it to work, she begged and begged to sit in the chair. She kept pointing and it and saying chair, chair. She already know that it allows her to be free to do what she wants.

Shriner's is also building and giving her a manual wheelchair to have also, so we are in the works for that chair to. Just a few more trips to Shriner's for some measuring and trying things out and I think we will be good. Thank you Shriner's for all your help!!!!

Saturday, July 14, 2007

Well I guess it is time to update our family site. We are all doing really well, with school being out I have a lot of help at home and I love every bit of it. Kortnee and Nic played soccer this spring and sure had a blast doing it. Nic managed to make the final goal for the year again to tie up the game. Boy was he on cloud 9. Kortnee did great too, her coach actually walked up to Nate and said I can't believe how aggressive Kortnee has gotten with the ball. Boy was her dad proud.They have also spent time up in Idaho with their grandparents and cousins too. This last visit was for a week and yes mom had a hard time with them being gone that long. But my wonderful Niece came and stayed with me while they were gone to help me out! Thank you Jessica. We love you !!!!!

We thought we would try our first family trip since our episode with Whitnee to the Hogle Zoo! The kids loved every bit of it. I think Whitnee's favorite part was the Monkeys, every time she saw one she would say Bobo Bobo (thank you Diego!) It was really cute. We had to cut our visit short due to the heat. So we plan on going back to finish our sight seeing this fall when it is quite a bit cooler for Whitnee. Well Whitnee had her first cold after our little episode in March, we managed to get through it with out Nate and I having a nervous breakdown. We are so greatful for her cough assist and suction machine. We managed to make it through her 2 week cold and so did she with out having to call the ambulance! Yippee !!!!!

I guess our most exciting adventure this summer so far was our trip to Shrinners Hospital this week for Whitnee's Wheelchair Evaluation. They measured her for her Wheelchair and then put her in a electric wheelchair and let her play with the joy stick. Her facial expression was priceless when she pushed on it the first time and started going in a circle. The look of Wow it moves when you touch this thing. The giggles between the movement was wonderful. A few more trips up there to play with the Wheelchair and I think by the end of August we will be in the process of purchasing her chair.

Friday, March 30, 2007

YEAAAHHHH Whitnee's home. After a long stay at the hospital Whitnee was able to come home on Wednesday. She still had an "IV" to administer some antibiotics, but it was taken out last night around 6:30pm. So now she is sitting on the couch and laughing at her brother and sister. Even Daisy (the dog) noticed her being gone so long, she wouldn't leave the bedside all night until I rousted her out.

What's Next?Well we will be feeding her through her "Gtube" for the next 6 weeks at least and possibly longer, only because she did not pass her swallow test at the hospital. The doctor said that she will likely recover fully, however the "G-tube" will always be a way to assist her staying healthy. As for the rest of us we are trying to get used to the routine. Anna, should get an honorary nursing degree after all of this.

As for now we are all doing much better especially not having to consider the hospital a second home. Still many things to come and learn over the next few weeks, but couldn't be happier now that she is home. I have had a few people ask about visiting and what they can do to help. Visiting is great, we just ask that you make sure you are healthy before you come. As for what we need, well we aren't really sure yet... We are still waiting for word back concerning her wheelchair session. As for now Just coming out and visiting is great.

Sunday, March 25, 2007

Tuesday's Surgery went really good. WHitnee now has a second belly button and loves to tell us about it. She was able to recover pretty quick from the re-intibation (due to surgery) and is now just a little sore from the procedure, but overall really doing well. Here is a picture of her with Dad (first time I got to hold her since this ordeal started).

It seems that we are in the "home stretch". Doctors are now pushing her off of the bi-pap machine for longer periods of time. The only time she will need to be on it is when she sleeps and when she is sick. Today we are hoping she can do 9 hrs independant of the bi-pap but we will see. What does all of this mean? Well, we think that she may be able to come home either Tuesday or Wednesday.

I want to thank everyone again for the calls, emails, and prayers of support. It has really helped to know that we have good family and freinds to help us.

Monday, March 19, 2007

Sorry we don't have any pictures this time, but we figured we needed to update the blog nonetheless.

Whitnee has been doing really good since the last time we posted. The ventilator was removed (extubated) on Friday 16th. She came off and exceeded the expectations of the doctors in the first 24hrs. She is now on a Bi-pap machine. The bi-pap provides the same type of assistance the ventilator did just on a "lesser" scale. The bi-pap machine will be another machine to Whitnee's entorauge. We hope at this point it will only be required when she sleeps.

Tomorrow Whitnee will be undergoing surgery. The procedure is called Nissen (named after the doctor that created it). To explain why we are doing this I have to tell you what the biggest things we have to battle.

1. FatigueFatigue plays a big part in her well being. Even as much as eating can cause her major fatigue, which then causes her to not progress physically including her immunity system and limited motor functions.2. AspirationAspiration can happen at anytime regardless of what she has eaten or is eating.

To battle these two things we are proceeding with the Nissen G-tube. It is a procedure that allows us to offer the nutrients that Whitnee needs, and also helps prevent aspiration.

Tuesday, March 13, 2007

Well we have been doing really good in the ICU lately. This shows Kortnee and Nic visiting their sister for the first time. This last few days has been pretty good. The recovery is coming along.

Whitnee has been able to come completely off of the sedative as of today and is making the nurses melt as she laughs at her finger wrapped in a foam band-aid to hold the Pulse-OX probe in place. She loves to read books with the nurses and even allows the Resperatory Therapists to get close without much of a fuss. We are still probably looking at a few more days of her in the ICU. SMA causes some issues of dependency on the respirator machine so they are slowly weening her off. Once she is rid of her cough and issues and her lung clears (upper right) we can start looking to bring her home.

She likes her teeth getting brushed mostly because they put water on the little brush/sponge and she likes the cool feeling (reminds me of a baby bird)

Thank you all for your calls and willingness to help out. Everyone has been so great and the food and goodies have been almost more than Dad can handle (yeah right). Your love and prayers are felt.

Friday, March 9, 2007

It has been a bit of a ride for the last week. Whitnee has been doing really good. We are in our sixth day in PICU (Pediatric Intensive Care Unit) don't be to alarmed, this is common for Whitnee's condition, SMA patients tend to become dependent on the ventilator so she has to be weened from it.I will try to get all of the events over the last few days into this blog... Monday Whitnee was stabalized but we had to change medications becasue she so irritable. I was told that they had given her enough to knock me out but it didn't seem to have an effect (sniff... I'm so proud... little steamroller :) so they moved her to morphine. With the morphin however her body was a littl to relaxed and didn't provide enough energy to the septic works in her body so she started to bloat and they had to lay off of the morphine. The result of that however was an event of flatulence that would rival her father after eating a full course "Bean Meal".Tuesday she actually opened her eyes a little and was still really irritable. but made progress with the ventilator (meaning they were able to ween her a little more)Wednesday Mommy was able to put her hair in pigtails and she then became the talk of the ICU. I think the nurse vote for "If I coould have _____ like Whitnee" her big blue eyes and eyleashes won.Thursday she was able to wake up and actually interact with mommy, she was able to read some books and watch the disney channelFriday (today) she woke up smiling and giggling at the stuffed chiuaua. She also got a duck from the Hill's that just about caused her to spit out the ventilator tube from giggling. She also got to see daddy and thought that he would love to see her cool new little finger ring (which is the "pulseoxymeter" sensor. Cool nonetheless)

All in all she is doint really good, she still has some blockage in her upper am dmiddle lobe of her right lung that they are hoping will come out wit continued RT (respriatory therapy).

Tuesday, March 6, 2007

Sorry I started the entries a little late this was actuallyMarch 3, 2007

Today was a day to mark as our first “Episode” with SMA (Spinal Muscular Atrophy). Whitnee had started a cold on Thursday (1st). We dealt with the cold as instinct told us to and made sure she was getting lots of liquids, naps, vitamins etc… she seemed to be doing well with the congestion, as slight as it was, and stayed playful for that day thru Friday. Friday we were able to win a battle with the insurance and get Whitnee the “RSV” shot she needed. We were even able to get her on somewhat of a routine on the cough assist machine that we had received, yet another battle won, the Saturday previous.